Professional Documents
Culture Documents
This work is copyright although it may be reproduced in whole or in part for study or training purposes subject to the inclusion of an acknowledgment of the source and no commercial usage or sale. Hepatitis NSW Produced with assistance of the Hepatitis NSW Medical and Research Advisory Panel. Text and design by Paul Harvey. First published July 2005 This online edition April 2013 ISBN: 978-0-9585318-5-6 Hepatitis NSW is funded by the NSW Ministry of Health.
Special thanks to: Professor Greg Dore, The Kirby Institue for infection and immunity in society; and St Vincents Hospital. Associate Professor Simone Strasser, AW Morrow Gastroenterology and Liver Centre; and Australian National Liver Transplant Unit, Royal Prince Alfred Hospital. Professor Geoff McCaughan, Chair of the NSW Ministerial Advisory Committee on Hepatitis; The Centenary Institute; and AW Morrow Gastroenterology and Liver Centre, Royal Prince Alfred Hospital. Dr Scott Davison, Liverpool Hospital; and University of NSW South Western Sydney Clinical School. Ms Janice Pritchard-Jones, Clinical Nurse Consultant, Royal Prince Alfred Hospital. Ms Sue Mason, Clinical Nurse Consultant, Royal Prince Alfred Hospital. Ms Ann Taylor, Clinical Nurse Consultant, Royal Prince Alfred Hospital. Ms Zoe Potgieter, Clinical Nurse Consultant, St Vincents Hospital. Mr Stephen Musgrove, Hepatitis C Peer Support Worker, NSW Users and AIDS Association.
via www.hep.org.au
twitter.com/HepatitisNSW
Page 2
hep.org.au
Cover images via Flickr.com Individual credits can be found in following pages.
Contents
Getting the most from this booklet ...................... 4 Introduction What will hep C do to me? Hep C outcomes chart Long term liver risk chart Notes on the long term liver risk chart What does my score mean for me? Tell me about hep C treatment Standard combination treatment Triple combination treatment Treatment side effects Before treatment Access to treatment Treatment at liver clinics Treatment at OST clinics Treatment via private specialists 6 8 9 12 14 18 20 22 24 26 28 30 32 34 35 Treatment via doctors Treatment in correctional centres Treatment monitoring Medicare subsidised treatment Alternative access to treatment After treatment Avoiding liver damage Cut down on alcohol Avoid smoking Marijuana Maintain a healthy body weight Avoid other hepatitis viruses Further information if you are on OST Recommended reading Useful contacts Glossary Reader survey 35 36 37 37 38 38 41 42 42 43 44 47 48 50 52 53 55
Page 3
Visiting your GP or clinic might be uncomfortable if you do not understand everything your health workers tell you. In this changing world, though, many healthcare workers think more carefully about how they communicate with their patients.
Think of your specialist, GP, clinic nurses and Hepatitis Helpline as your Two Hep C Questions healthcare team.
Page 4
hep.org.au
Two hep C questions: Two hep What C questions: will happen What to will me? happen Should toIme? go on Should treatment? I go on treatment? Page 5
Page 5
Introduction
This booklet aims to help you make good decisions about your health. It provides a guide to long term hep C health outcome. It is intended for use by you AND your GP (doctor), liver specialist or CNC (Clinical Nurse Consultant; a highly trained nurse). People with hep C who dont feel ill mightnt think this booklet relates to them. Liver disease can occur, though, without major symptoms of illness. Only your GP and liver specialist can tell you what condition your liver is in. Your relationships with your specialist, GP and nurse are important. Liver tests are complex and difficult to interpret without medical training. These healthcare workers can work with you and take into account your individual health issues and needs. This booklet is about your hep C outcome, treatment and looking after your liver. You can get many more information resources about other aspects of hepatitis from the Hepatitis Helpline or from www.hep.org.au
Page 6
hep.org.au
Page 7
Page 8
hep.org.au
After 40 years
Page 9
To predict your chance of long term liver damage: ask your GP for a referral to a liver clinic or specialist for a Fibroscan or, if required, a liver biopsy with your specialist, apply your score to the Long term liver risk chart (page 10) and factor in any confounding factors.
Page 10
hep.org.au
Fibroscan
A fibroscan machine (right) uses advanced ultrasound technology to assess the stiffness of your liver. It measures the speed of a vibration wave (a pulse) that is initiated by a probe on your lower chest overlying your liver. The stiffer your liver, the more likely that fibrosis or cirrhosis exists. The scan takes only 5-10 minutes and does not involve needles or other invasive instruments. Apply your fibroscan score to the Long term liver risk chart on the following page (also see notes on page 12).
Liver biopsy
A liver biopsy involves taking a small sample of the liver which is examined under a microscope. Hospitals may use different methods of scoring, but your specialist will be able to interpret these. Liver biopsy scores can be applied to the Long term liver risk chart on the following page by using the notes on page 12.
Image via Google Images Page 11
Time frame
Your clinician will be interested in knowing how long you have had chronic hep C. Your length of chronic infection will help your clinican to interpret the meaning of your fibrosis score and your fibroscan or biopsy results.
Your fibroscan score allows your doctor to chart your place on the Long term liver risk chart.
Factors that are associated with a higher risk of serious liver disease include:
1. in addition to chronic hep C, also having HIV or chronic hep B 2. heavy alcohol intake, now or in the past 3. being aged 40 or more when hep C was contracted 4. obesity 5. type 2 diabetes 6. being a heavy smoker of tobacco or marijuana.
Consider making beneficial lifestyle changes bullet points 2, 4, 5 & 6. Have follow up visits with your doctor every 6-12 months. Have fibroscan test every 1-2 years. Unless treatment is a priority for you, youd be generally advised to consider waiting for improved treatment options to become available rather than have treatment now. Keep in contact with your Hepatitis community organisation. This will keep you in touch with future news on improved treatment options.
Page 12
hep.org.au
Page 13
7.5 9.4
2 (moderate fibrosis)
9.5 or higher
Page 14
hep.org.au
Page 15
Nicks story
As an example, of how the Long term liver risk chart works, consider a guy in his late 50s. Well call him Nick. Nicks had hep C for around 30 years. He had a fibroscan six months ago with a score of eight. Nicks fibroscan score of eight is not in the serious end of the scale but needs to be considered in light of his lifestyle. He has no more than two middies after work during the week but he has 6-8 per day on the weekends. He doesnt smoke and is generally fit but is at the upper limit of his healthy weight range. Given Nicks weekend drinking levels and him nudging being overweight, his risk of further liver damage is increased. Its probably time for Nick to get more serious about his health, reduce his drinking and more closely monitor his liver disease.
Page 16
hep.org.au
Page 17
Because hep C is associated with diabetes and fatty liver, try to avoid becoming overweight or developing diabetes speak to your GP about these important issues.
Page 18
hep.org.au
Medium score
As with the low score recommendations (left), if you got a medium score, you need to take extra care of your liver. Think about not drinking alcohol at all. Have your liver checked twice a year and have an annual Fibroscan examination done. Talk to your GP and specialist about alcohol and also discuss hep C treatment. Think more seriously about getting treated. Phone the Hepatitis Helpline. They may be able to put you in contact with someone who has already tried treatment. Also speak to the Hepatitis Helpline about their HepConnect peer support service.
High score
Falling into the high score range means you need to take extra special care of your liver. In addition to the advice for low and medium scores, you should be having regular medical checks with your GP and specialist. Because of your higher chance of progressing to serious liver disease its important to think hard about having treatment. There might be a good chance your hep C will be cured. If that happens, youll minimise your chance of serious liver disease. Avoid alcohol, cigarettes, marijuana and any drugs or medications that might impact on your liver. Your specialist will be best suited to advise you on your liver and overall health options.
Page 19
Page 20
hep.org.au
Your chance of being cured with hep C standard combination treatment is related mainly to: younger age shorter length of infection being female (and premenopausal) low alcohol intake having a healthy body weight having a lower viral load having hep C genotype 2 or 3.
Page 21
Page 22
hep.org.au
NB: If you have cirrhosis even if you clear your hep C you will still require ongoing long-term follow-up and monitoring with your liver specialist.
Page 23
Page 24
hep.org.au
Page 25
Management of treatment side effects has improved significantly. Better management means that more people are able to access treatment and finish it. Speak to your treatment specialist or CNC about any side effects when they occur.
Page 26
hep.org.au
Page 27
Before treatment
If youve decided to start on treatment, the key thing is preparation. Treatment can take 24-48 weeks so plan it at a time that best suits your lifestyle, work and other commitments. Were you planning on having babies? These plans will have to be put on hold while on treatment. It could be a mistake to plan to go on treatment too soon after having a baby. Are you are a woman with hep C? If so, consider having hep C treatment before you experience menopause. Before menopause, you have a slightly higher chance of treatment success compared to men. Are you personally able to go the distance? This is something that you mightnt know until you give it a go but ask yourself these questions: are you currently relying on more than two drinks at the end of each day to relax? If so, how many are you having? Could you do without them? do you feel overly stressed by anything in your life? have you dealt with tough times in your past and come through okay? have you previously experienced thyroid illness or depression?
Treatment readiness
Treatment readiness involves knowing enough about treatment to make an informed decision and being able to take into consideration your work, family and personal situation. Being treatment ready puts you in the best place for your treatment to succeed. Are you the main breadwinner? Lots of issues will need to be considered, such as the possible need to take time off work for appointments at the treatment clinic. Will you be able to take sick days off work if you have a hard time with treatment drug side effects? Do you play a key role at home? Do you have a larger share of household duties? Are you able to get support from other people to help lessen your workload?
Page 28
hep.org.au
Work-up
If you decide to go on treatment, firstly youll have to go through what is called a work-up stage. Your CNC will ask questions and take a thorough history about your home, work, health and lifestyle and arrange medical tests and possible referrals. You may be advised to see a psychologist, psychiatrist, social worker or other health professional prior to starting on treatment. This is not to screen you out of treatment. The aim is to assess your support needs and best prepare you for treatment.
Image by web4camguy via Flickr.com Two hep C questions: What will happen to me? Should I go on treatment? Page 29
Your CNC will work with you to identify issues that need consideration or action before you start treatment. Your nurse will also provide healthcare and support throughout your entire treatment course and follow-up period.
Access to treatment
Hep C treatment is most commonly provided through hepatitis or liver clinics at major public or private hospitals. It is often available at OST clinics (Opioid Substitution Treatment). It can also be provided by private specialists (gastroenterologists or hepatologists). Some GPs can co-manage your treatment. In some cases, they can fully organise it and provide it for you. It is also available in NSW correctional centres (prisons). Speak to your GP and the Hepatitis Helpline about your hep C treatment options.
Ive done a lot of things that some might say are courageous or risky. Ive hitched and driven across America, travelled through the Middle-East and had a pretty full and interesting life, but nothing has given me a sense of accomplishment like completing 48 weeks of combination treatment. No one could do it for me. It was up to me to work out how to find a way through. Completing treatment and clearing hep C are two of my proudest achievements. Walters story - Abridged from Hepatitis Australias booklet, Treatment, Life, Hep C and Me.
Page 30
hep.org.au
Treatment support
Hepatitis NSW runs a HepConnect peer support service which may be able to put you in contact with someone who has already been on treatment. Phone the Hepatitis Helpline for more information about HepConnect or other support services.
Page 31
Page 32
hep.org.au
When you see the specialist, they will discuss your liver health problems and suggest possible monitoring or care plans including the merits of going on hep C treatment. Follow-up may be suggested with the specialist, the liver clinic CNC or with your GP. In any case, its a good idea to ask for copies of any test results. If in doubt about your liver health care, or for further information, dont hesitate to talk to the clinic CNC. You dont need a referral to chat with your CNC but its good to phone them as they may be busy with other patients.
Image by 21TonGiant via Flickr.com
Page 33
Page 34
hep.org.au
Page 35
Page 36
hep.org.au
Treatment monitoring
Monitoring is required to check that treatment is working and to keep an eye on side effects. You will be asked to return regularly to the treatment centre or to your doctor for blood tests and general assessment. PCR viral load tests are used during treatment at 4, 12 and 24 weeks to show whether the treatment drugs are working or not. They measure the amount of hep C virus circulating in your blood. If these tests dont show big drops in the level of virus during treatment then it isnt working well and you may be taken off it. A different type of PCR test will also be done three or six months after the end of treatment to check whether you have been permanently cured of hep C. Viral load does not show the progression of hep C. It is measured to help determine your response to treatment. Your treatment nurse or doctor will discuss this with you when testing your viral load, and will explain the results.
Medicare subsidised hep C drugs are not entirely free. A monthly administrative co-payment is required. This is paid at the hospital pharmacy when you collect each months supply of drugs. The level of your co-payment ranges from $5 to approximately $40* per month and depends on whether you are attending a private or public treatment centre, and whether you are a health care or seniors card holder, pensioner or war service veteran.
*
Page 37
After treatment
After successful hep C treatment, you dont have immunity to hep C and could catch the virus again. It is still important to avoid blood-to-blood contact with other people. If you clear hep C your body will continue to manufacture antibodies and you will still show as hep C antibody positive. This shows that you had a past infection.
Having antibodies to hep C does not make you immune to catching it again.
After treatment finishes, you will have follow-up visits for PCR tests at three months, six months and one year with your treatment clinic or GP. These tests will determine whether you have been cured or not. Clearing your hep C does not give a green-light to resume heavy drinking or smoking. Everybody should try to avoid risks for liver disease.
Page 38
hep.org.au
Even if you successfully clear the virus, your past hep C may have caused advanced liver scarring (cirrhosis) which may remain. If this is the case, your specialist will arrange follow-up and monitoring. If youve been cured of hep C but have cirrhosis, you still have a small ongoing risk of liver cancer. If your treatment didnt clear your hep C you should continue to see your GP for regular visits and monitoring. He or she will be able to advise on how to minimise ongoing liver damage. He or she will also keep you informed of any new developments in hep C treatments. Also keep in touch with your treatment clinic some may offer a fibroscan test every year or two to help monitor your liver.
Six months posttreatment I feel like a new woman. The heavy burden of fatigue Id lived with for years is gone and I am enjoying the kind of full and busy days I had enviously watched others enjoy. Hep C undetected at the final stage sounded like the sweetest words in the English language. Meeras story, Hep Review, Edition 73, June 2011.
Page 39
I would have appreciated knowing about possible long-term side effects at the time that I agreed to go into the treatment program. It may not have changed my decision as it would seem that the odds are fairly small, but it would have changed my current resentment factor. Johns story - Hep Review, ED71, December 2010.
Page 40
hep.org.au
Image by DavidDennisPhotos.com via Flickr.com Two hep C questions: What will happen to me? Should I go on treatment?
Page 41
Avoid smoking
Having hep C is an important reason to consider quitting tobacco: smoking may lead to worsening of gum disease and dry mouth associated with hep C new research shows that smoking can speed up the progression of liver disease in people with hepatitis people who smoke have higher rates of some cancer types if they also have hepatitis smoking increases the risk of severe complications if you have a liver transplant. There are several different services available to help you give up smoking. These include telephone QuitLines and internet Quit websites. Your first step could be chatting to your GP.
Page 42
hep.org.au
Marijuana
Daily use of marijuana is associated with liver damage. People who use marijuana every day are more likely to have severe fibrosis. On this basis, laying off heavy pot smoking is a good idea. On the other side of the coin while we do not condone or encourage its use occasional (light) use of marijuana has been shown to be helpful for some people in dealing with hep C treatment side effects and coping with treatment drugs. As with alcohol intake, the key message with marijuana is moderation. Services are available to help you manage marijuana use. Phone the Alcohol and Drug Information Service for more information (see page 50) and chat to your GP. Obesity (being overweight) is linked to an increased risk of hep C disease progression.
Image by scott* via Flickr.com
Page 43
Exercise
In addition to diet, losing weight is about getting more exercise on a regular basis. This may not be easy if you are already feeling ill or tired from your hep C. It is important, though, that you try. Perhaps you can find ways to get more enjoyment out of your exercise. Do you prefer to stay indoors or do you like to get out? Consider listening to music while you exercise at home or while you walk or run. Can your walking time become the time you make phone calls to catch up with family and friends? Walking a pet is a good way to get some exercise. Some exercise can involve joining in with other people. Have you thought of golf or working out at a gym? Perhaps a regimented exercise regime like Zumba or Pilates classes might be your thing? The important thing is to find some activity that you enjoy. Speak to your GP or the Hepatitis Helpline for more information or ideas.
Page 44
hep.org.au
Two hep C questions Two hep What C questions: will happen What will to me? happen Should to me? I go Should on treatment? I go on treatment? 45
Page 45
Diet
Having hep C and eating well is not about special diets. You dont need to avoid red meat or foods with a high iron content. Nor do you need to avoid coffee or dairy products. Its more about sensible eating the sort of approach suggested in The Australian Guide to Healthy Eating (see page 50). Check food labels and avoid products that contain trans-fats, fructose sugars or corn sugars as these products have been shown to cause liver damage. Also take care with herbal medicines. Some can have a toxic effect on the liver while others may be contaminated with harmful substances in the factories where they are prepared. Specialist hep C dietitians can offer practical advice on healthy eating especially if you are homeless or doing it tough. For more info, chat to your GP or the Hepatitis Helpline.
Page 46
hep.org.au
Image by maureen_sill via Flickr.com Two hep C questions: What will happen to me? Should I go on treatment?
Page 47
Page 48
hep.org.au
Page 49
Recommended reading
Want to know more about hep C treatment or living better with hep C? Check out the following resources. They are available free via the Hepatitis Helpline or from hep C treatment clinics and Needle & Syringe Program outlets. Most are also downloadable from www.hep.org.au What you need to know: a guide to hep C (booklet) Biopsy: the inside story (factsheet) Complementary medicine (factsheet) Diet and health (factsheet) Fatigue (factsheet) Genotypes (factsheet) Heps A, B and C (factsheet) Illness outcome (factsheet) Liver biopsy and fibroscan (factsheet) Liver function (factsheet) Liver transplant (factsheet)
Page 50 hep.org.au
Stress (factsheet) Support services (factsheet) Symptoms (factsheet) Telling others (factsheet) Testing overview (factsheet) Treatment (numerous factsheets) The Big Combo (DVD) Guide to Healthy Living (booklet) Hepatitis C and Food (brochure) Hepatitis B: what you need to know (brochure) Living with Cirrhosis (booklet) Moving On After Treatment (booklet) Testing Information (booklet) Treat It, Beat It (booklet) Treat Yourself Right (booklet)
Page 51
Useful contacts
For further information, advice or support, check out the following services:
Local GPs (phone the Hepatitis Helpline for a listing of local GPs who have had ASHM hepatitis training) Your local liver clinic (phone the Hepatitis Helpline) Hepatitis Helpline
1800 803 990 (other NSW callers)
NUAA (NSW Users Association) NSW statebased drug users community organisation
www.nuaa.org.au
ADIS (Alcohol & Drug Information Service) 9361 8000 or 1800 422 599
Page 52
hep.org.au
Glossary
Ascites An accumulation of fluid in the abdominal cavity. Anaemia A reduced number of red blood cells that causes fatigue and possible shortness of breath. Hep C antibody test Antibodies are substances in the blood and part of the bodys immune system. The hep C antibody test is a type of blood test that looks for presence of antibodies that specifically help fight against hep C virus. A positive antibody test result shows that someone has come into contact with the hep C virus but it cant tell whether they have cleared it in the past or have an ongoing infection. Biopsy Microscopic examination of a small sample of the liver, taken by a special instrument. The actual biopsy procedure takes just a second and is usually done in a day visit to a hospital. It is the most accurate report on the condition of a persons liver. Cirrhosis The bodys general response to serious cell damage is the scarring of affected tissue. Serious liver inflammation leads to scarring of liver tissue. When such scarring is extensive and the structure of the liver may be altered, it is termed cirrhosis. This can interfere with the normal functioning of the liver. Clinical Nurse Consultant (CNC) Specialist nurses at Liver Clinics, OST clinics and private practices who provide clinical monitoring and care, and patient education and support services. Decompensated cirrhosis The liver can often endure a certain amount of cirrhosis before its ability to carry out normal functions is affected. Decompensated cirrhosis is when the level of damage has started to interfere with the livers ability to function properly and is causing symptoms such as weight loss, fluid retention, stomach swelling and bleeding problems.
Page 53
Fibroscan test Similar to an ultrasound. It assesses the degree of liver stiffness: the stiffer the liver, the more likely that fibrosis exists. This is becoming a standard monitoring tool annual tests which may show an increase, decrease or levelling of a persons liver fibrosis. Fibrosis Fibre-like formation of tissue involved in thev repair of damaged cells. It is often called scarring. Gastroenterologist A medical specialist working with diseases of the liver, stomach, intestines, oesophagus and related organs. Genotype The particular type of hep C virus that a person has. There are six main genotypes and within each of these there can be several sub-types. Hepatocellular carcinoma Primary cancer of the liver. It is not common and when associated with hep C, is usually preceded by cirrhosis of the liver. Hepatologist A gastroenterologist who specialises in the liver, and who usually works out of a hospital liver clinic.
Page 54 hep.org.au
IL28B test A blood test that looks at your genetic makeup and how responsive you are to interferon. This can guide how likely you are to respond to combination treatment. The test is currently only useful for people with hep C genotype 1. Infectious disease specialist A medical specialist working with people affected by infectious illnesses. Liver failure Liver failure occurs when the liver becomes so damaged that it is no longer able to function. It is caused by worsening cirrhosis. Treatment may include liver transplant. PCR test A type of blood test that looks for presence of the hep C virus. There are three variations of the hep C PCR test. One can tell if the virus is present in the blood (qualitative test). Another can estimate how many virus particles are present in the blood (quantitative test). The third can tell what particular subtype of hep C virus someone has (genotype test).
for a ONE in 100 chance to win a $50 gift card of your choice
Its easy, after youve read the booklet fill out this form to tell us what you think. Or go to: http://www.surveymonkey.com/s/K3DDBXJ
1. What is your age? under 20 20-29 30-39 40-49 female male trans/inter 50-59 60 plus 2. What is your gender? 3. What is your postcode? (or prison code?) ............................................ 4. Optional: For the purposes of the prize draw, what is your first name and contact phone number, or if you are currently inside, your MIN? (this prize offer is for NSW residents only - one draw per person). .................................................................................. 5. Is a language other than English spoken at home? ..................................................................................
Each time we receive 100 replies (with contact details) a new prize winner will be drawn.
6. Are you Aboriginal or Torres Strait Islander? .................................................................................. 7. Please describe yourself (circle as many as you want) a. Person with hep C b. Person who has been cured of hep C c. Partner, family or friend of someone with hep C d. Person with hep B e. Current prisoner f. Ex-prisoner g. GP or allied health care worker h. Community or youth worker i. Person who currently injects drugs j. Person who used to inject drugs k. Working in NSP sector l. Working in AOD (alcohol & other drugs) m. Other (please describe) .................................................................................. NB: this offer is for NSW residents only. One draw per person. Option 1: Carefully rip or cut out this page and op it in an envelope and post it to: HNSW PO Box 432 DARLINGHURST NSW 1300 Option 2: Fax both sides of this form to 02 9332 1730 Option 3: Use the online survey link on the previous page.
hepatitis helpline
Page 58
hep.org.au
Page 59
MY TREATMENT DETAILS
Page 60
hep.org.au
NOTES
Page 61
NOTES
Page 62
hep.org.au
NOTES
Page 63
Hepatitis Helpline 1800 803 990 Hepatitis NSW p: 02 9332 1853 f: 02 9332 1730 PO Box 432 Darlinghurst, NSW 1300 info@hep.org.au 414 Elizabeth Sreet Surry Hills Sydney 2010 www.hep.org.au
Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.
ABN 30 408 095 245 A non-profit health promotion charity funded by the NSW Health Dept. Accredited by the Quality Improvement Council of Australia (QIC). Donations of $2 and over tax deductible